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Friday, August 22, 2014

Elizabeth Street

THE COST OF BREAST CANCER: HOW I COPED WITH A TERMINAL DIAGNOSIS AT 31

Oct 10, 2013

The Cost of Breast Cancer: How I Coped With a Terminal Diagnosis at 31

We published this personal story about Emily’s battle with breast cancer in honor of October, Breast Cancer Awareness month. Emily chronicled her journey through her blog, The Bright Side: Breast Cancer at 31, bringing to life the highs, lows and very human experience of being diagnosed with such a serious disease at such a young age.

In this essay, she reveals another side of illness not often explored—the toll it takes financially. Emily passed away on September 27, 2013, at the age of 35. We are proud to tell her story and to remember Emily, who we knew and loved.

-The LearnVest Editors

New Year’s weekend 2010 I was feeling pretty good.

I had been happily working as an account director at a small New York City–based public relations firm for three and a half years. The job had already taken me to amazing destinations across the world: Bora Bora, London, and on a cruise to Greece and Turkey, to name a few.

That fall I’d been especially busy, but I’d kept up with everything and really enjoyed it. Most evenings I’d return to the one-bedroom apartment I owned in Hoboken, N.J., and feel pretty satisfied. I was doing well for 31 years old.

It was only a few days into the new year when I changed into pajamas and saw that my right breast looked not quite right—like the nipple was squished. I imagined that maybe I’d leaned on it, but the next morning it still looked strange.

I was nervous, but I got up the nerve and did a self breast exam. I didn’t find a lump, but my whole right breast felt hard, completely different than the left one. I called my mother on the way to work and she insisted I make a doctor’s appointment. I did. That first doctor seemed unconcerned and sent me for a perfunctory mammogram and sonogram two days later.

I went to that fateful appointment on Thursday by myself. After the sonogram, as I was still laying on the table, the radiologist and breast surgeon came into the room together and broke the news: I needed to have a biopsy immediately to confirm what they suspected—breast cancer.

“Is there any chance it could be something else?” I asked.

“I really don’t think so,” replied the surgeon. “If the biopsy came back negative, I would redo it.” That’s how sure she was.

They had to squeeze me into the schedule, so I waited around all day. I called my mother first from an unused storage room they gave me for privacy, and she and my father got into the car instantly and drove the hour to meet me. I called my boss to say I wouldn’t be coming back to work that day. I cried.

My parents arrived, I had the biopsy, and the tests confirmed what we’d already suspected: I had cancer.

The First Few Months With Cancer

After a series of tests and doctor’s appointments, I learned that specifically I had cancer in my breasts and liver. I would need chemotherapy for four months to shrink the tumors, a mastectomy on one side, liver surgery ten days later, and then breast radiation.

Already, the prices without insurance would have been staggering. I was lucky in the sense that I had decent health insurance (an employer-sponsored policy through Oxford that took an automatic $412.01 out of my paycheck each month), an understanding boss and a supportive family. After the $1,000 annual deductible, there was a 20% coinsurance charge with a $3,000 maximum. I didn’t necessarily know it then, but I’d be maxing that out each year for as long as I was sick. That meant at least $4,000 out-of-pocket each year, not counting copays, prescription costs or doctors who were out of network.

My treatments continued until that next spring 2011, when I had a clear PET scan. I was in remission!

Unfortunately, the celebration only lasted a few months. My August scan showed that the cancer was back in my liver and there was a spot on my spine, and they gave me two radiation treatments—and started me on another round of chemo. It was a devastating blow.

The Price of Being Sick

Right after we discovered that the cancer was back, I was put on an expensive oral chemotherapy drug called Tykerb. It was classified in such a way that my insurance only paid half the cost, meaning I owed $1,800 a month for that medication alone. I didn’t qualify for financial aid through the drug company because my salary was too high, but my mother, a pharmacist, reached out to all her friends to find opportunities for aid. A social worker at Roosevelt Hospital, where I’d been receiving treatment, helped me apply for help too.

At first, I felt guilty. I thought, I have a job and insurance! Maybe others need it more. But the costs of treatment, plus my $1,500 monthly mortgage payment, started to weigh heavily. I had to try.

Ultimately, the Patient Advocate Foundation awarded me $1,750, CancerCare offered $325 and the Pink Daisy Project sent me gift cards to Trader Joe’s, Subway and Applebee’s that added up to about $400. I also applied for help from Team Continuum, a hospital conglomerate to which Roosevelt belongs. They paid the management fee ($148 per month) at my condo for four months. Insurance covered a couple wigs when I first lost my hair, then the American Cancer Society gave me one in 2012. Every bit made a difference, and I’m so grateful.

In 2010 I filed for short-term disability, which came to about $800 a month, when I was off work for my surgeries for six weeks. I had to be out for a lot of treatments, but my incredibly generous boss said I could take the time, as long as I maintained my work. I never took a reduced workload. I couldn’t travel in the beginning, so I missed some business trips, but mostly I just worked it all around my doctor’s appointments.

Each year has brought a different bill for things like deductibles and coinsurance amounts for chemo, payments for my out-of-network doctors and copays for those in-network, more tests and prescriptions. In 2010, the year of my diagnosis, my total out-of-pocket costs were $11,708.51. The next year, my total out-of-pocket costs were $10,693.12, and in 2012 they were “only” $6,423.17.

Looking back, as far as I can now track, the total billed to my health insurance company was $1.26 million—which doesn’t count the first year and four months of my treatment when I had two chemo regimens, two surgeries and one course of radiation.

In some ways, I was financially fortunate. I have always been a saver, so I had at least some money to fall back on in a worst-case scenario. And, miraculously, in 2008, before any of this ever happened, a fellow Villanova alum called to sell me long-term disability insurance. I only listened to the pitch to be nice, but then I mentioned it to my father and he said it couldn’t be a bad idea. So I signed up through Northwestern Mutual. That has proved incredibly important.

I can’t imagine how people without insurance do it.

Where I’ll Turn Next

On May 29 of this year, my 35th birthday, the nurse practitioner called to tell me a test showed that my liver enzymes had spiked. This is a possible side effect of the current chemo, so they tested it again without alarm. When the numbers remained high, my doctor called me directly, which is never a good sign: I needed a PET scan.

On June 7, I went to work but couldn’t ignore a lingering feeling of dread. I met my parents, as usual, in the lobby of the hospital before my appointment with the doctor. The results weren’t good.

The number of tumors in my liver had increased. In fact, there were so many that they couldn’t be counted, though the organ was still functioning completely. Also, the cancer had spread to my brain. The doctor suggested that I quit my job and make the most of the time I have left.

I called my boss and told her the situation and, as usual, she was beyond generous and understanding. And, after spending the next week tying up loose ends and telling my other coworkers, I left my job with an arrangement in place: I had 13 vacation days saved up and, luckily, two holidays fell during that time, so my last day at work was June 26th. I then continued to get paid for 15 business days, and my short term disability kicked in the next day to pay me $816.19 for three months. After that, my long-term disability will kick in, which pays me 43% of my former salary.

My employer continues to pay 50% of my health insurance premium until my short-term disability runs out in October. Then, I’ll go on Cobra insurance for $688.18 a month, for up to 18 months. If I’m still around then, which right now seems like a lucky position to be in, I’m not sure what I’ll do. Maybe I would be able to find a solution through Obamacare?

I am also applying for Social Security disability. I submitted the paperwork, and they’re expediting the process since I have a condition that is “expected to resolve in death,” but the wait is still three to four months.

In 2013, as of August, I have paid $2,500 in out-of-pocket costs for chemo, copays and prescriptions. Separately, I also paid a lawyer $900 to draw up my will and other paperwork.

Right now I’m facing an additional $1,600 bill for my radiation to treat the brain tumors. Apparently, my insurance coverage changed last year and radiation therapy is no longer subject to my deductible and coinsurance limits (which I reached back in January). Now it’s subject to a 50% copay, with a limit of $100 per day, per provider. Since I had 15 days of radiation, plus the day of “planning,” I’m now being billed $1,600 on top of everything else. I’m seeing what I can do to fight it, but we’ll see. I have other more important things on my plate right now.

My doctor predicted that I had three to six months to live from the day in June I sat in his office, and he delivered the bad news. At this point, I also have cancer in my lymph nodes, abdomen, spine and chest.

I am not a bucket list kind of person. I just want to spend time with my family. I worry for them the most after I’m gone—the grief. I’m going to keep my blog, “The Bright Side: Breast Cancer at 31,” going for now too. I think that will kind of be my legacy. I started it around the time I was first diagnosed to tell my story, share information with loved ones and friends, and offer a little levity—counting boob flashes and documenting trips to the wig store once I lost hair from chemo—to something so serious.

In life, my father always says, “The best way is to go through it, not around it.” We don’t ignore my disease or pretend that this is not happening, but we don’t talk about it 24/7, either.

All said and done, there are a few lessons I’d pass on to anyone starting a similar struggle:

Don’t be afraid to ask for help. You need it and people want to be there for you, even organizations.

Always say thank you if you’re lucky enough to get aid. I received an extra package of T-shirts from one organization because they liked my thank-you note.

Start your will before you have to. That’s not what you want to be dealing with when your time may be limited.

Always look at your medical bills and explanations of benefits. You will absolutely find mistakes—I have found several discrepancies.

I knew this day would come. I just hoped it would be at least 20 years down the road, not when I’m 35.

Memorial contributions may be made in Emily’s memory to The Helen Sawaya Fund c/o Dr. Gabriel Sara, Roosevelt Hospital, 1000 Tenth Avenue, 11th Floor, New York, NY 10019 and the Pink Daisy Project.

By LearnVest's Emily E., as told to Nora Zelevansky

For more articles by LearnVest, check out 
10 Questions for an Obamacare ExpertGenetic Testing: Worth It or a Waste of Money, and 6 Times We Tend to Overspend (and How to Stop).

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